Donate Tumor Tissue

Your Surgery or Fluid Drain Can Advance FLC Research

Fibrolamellar tumor tissue is critical to create models of FLC. These models can help researchers identify FLC’s key points of vulnerability and test new treatments.

With a few easy steps, you can support current research by donating tumor tissue to the Fibrolamellar Cancer Foundation (FCF) Biobank.

What is the FCF Biobank?

The FCF Biobank is a centralized repository of tumor tissue, drained fluid and blood samples contributed by fibrolamellar patients. Our biobank protects and preserves these samples so we can distribute them to researchers all over the world, free of charge, to support important research into the disease.  Additionally, our biobank collects clinical information from fibrolamellar patients to enable research into factors that affect treatment and outcomes.

In this video from the FCF’s September 17, 2020 Virtual Fall Gathering, Patty Cogswell discusses the FCF Biobank Program.

How to Contribute

To donate tissue from an upcoming surgery or fluid draw

  • Contact us at (203) 340-7805 or pcogswell@fibrofoundation.org, or fill-in the brief form below
  • Our team will
    • Send our FCF Biobank Consent Form for you to review and sign
    • Discuss the consent process with you and answer questions
    • Work with your hospital to collect tissue not needed for your care
  • You then tell your surgeon that you want to donate your tumor tissue through the FCF Tumor Donation Program and that we will be contacting his/her team

Frequently Asked Questions

Yes. The sooner you contact us, the more likely it is that we can obtain your tissue. If you contact us before surgery, we can work with your hospital to ensure that your tissue is saved and sent to us in the correct way. Otherwise, your tissue may not be useable for fibrolamellar research.

No. Your safety and health always come first. No additional tissue will be removed surgically as a result of your participation in our Tumor Donation Program. Only tissue not needed for diagnosis or care (tissue which would otherwise be discarded) will be donated to us.

Your privacy is very important to us. To protect your privacy, each tissue sample sent to our biobank is labeled with a unique identification number and any personal information is removed. Researchers only see these identification numbers so they never know the identity of the patients whose samples they receive.

No. The overall results of ongoing fibrolamellar research are published regularly and some results are available on our website, however, it is not possible to share with an individual patient the results of research performed on materials that used their tumor tissue.

Research conducted with your information and specimens will likely not help you directly, but it may help fibrolamellar patients in the future. For example, the research done on tissue in our biobank could result in the discovery and development of new drugs, tests, or other commercial products that advance the field of fibrolamellar treatment for all fibrolamellar patients. Patients who contribute tissue through the Tumor Donation Program will not be given any compensation for such discoveries or commercial products.

Many patients find that planning a posthumous legacy tissue donation provides comfort, knowing they are contributing to a better understanding of FLC and bringing hope to others. If you are interested, please contact the Foundation.

Please note that time is of the essence to make sure tumor tissue remains viable for research. As a result, legacy donations must be coordinated before death.

If you have further questions contact Patty Cogswell at pcogswell@fibrofoundation.org. To download a brief overview of the program click here (for an english version) or click here (para una versión en español).